Q&A about chronic fatigue or Myalgic Encephalomyelitis (ME/CFS) with Dr Charles Shepherd

DrCharlesShepherd

We are halfway through the chronic pain and fatigue theme, and we are very excited to announce that on Tuesday 6th August we will be hosting a Question and Answer session. This session will be led by Dr Charles Shepherd.

If you have any questions about chronic fatigue and Myalgic Encephalomyelitis (ME/CFS) then be sure to leave them below!

My name is Dr Charles Shepherd and I’m Medical Adviser to the ME Association (MEA).

The MEA is a medical charity that provides information and support to people who are experiencing chronic fatigue and are querying whether they may have M.E. (myalgic encephalopathy/encephalomyelitis), as well as to those where a diagnosis of M.E. has already been confirmed.

Chronic fatigue is a relatively common symptom of many disabilities and long-term illnesses, such as cancer and multiple sclerosis, as well as A WIDE RANGE OF INFLAMMATORY, INFECTIVE and neurological conditions. 

M.E., however, is a stand-alone diagnosis with other debilitating symptoms that are necessary for a diagnosis. More information on the symptoms and diagnosis of M.E. can be found on our website: https://www.meassociation.org.uk/about-what-is-mecfs/

Contact information

• ME Connect telephone number: 0344 576 5326
• MEA Website
• MEA Membership
• MEA Facebook page

Why do I research M.E?

My longstanding clinical and research interest in M.E. follows personal experience. This was triggered by a nasty episode of chickenpox, which was caught from one of my patients. So, I have a very thorough understanding of all the problems that M.E. patients face in relation to diagnosis and management, and the many uncertainties that surround the disease.

I have a specific clinical interest in the assessment of people who present with chronic fatigue in primary care, especially in relation to making sure that people who have M.E. receive an early and accurate diagnosis.

I am happy to answer questions on all aspects of living with M.E. (i.e. management, education, employment, benefits, research) and how people with chronic fatigue should be assessed in order to arrive at the correct diagnosis for this very common symptom and how to then provide appropriate forms of management.

Leave your question in the comments below, and Dr Charles Shepherd will be live on the community on Tuesday 6th August at 10.30am to respond. See you then!

LifeOfPippa

Looking forward to this! 

Sam_Alumni

My question is, how can I best support a co-worker with ME? 

Louise2001

How do I recognize the signs of ME? What research has been done?

jack13

Ive had ME for 15 years. I find now my condition as worsened in the last year. Is ME a condition that will worsen the longer you have this illness? And is this common to happen. Longer your ill the worsening of the illness?

Chloe_Alumni

Questions from Twitter:

1) How are chronic fatigue, ME and fibromyalgia different to each other? And similar?
2) When a rheumatologist diagnoses you with fibromyalgia, does this mean you also have ME and/or CFS? Or are they individual diagnoses?

Chloe_Alumni

How should someone manage their chronic fatigue? There seems to be a fine balance between doing too much and not doing enough which can then make it harder when you do anything at all.

April2018mom

How can I support my friend who has the condition? She was recently diagnosed. 

jaja

What level of pain should be expected in ME/CFS

Thank you

Chloe_Alumni

From Facebook: My daughter has CFS, when do I let her rest and when to try and keep her going?

DrCharlesShepherd

LifeOfPippa said:

Looking forward to this! 

Thanks Pippa

I need to start dead on 10.30 this morning and may not be able to continue much beyond 11.30 as I then have to go to Heathrow to pick up my middle son, who is coming home from Kenya - where he lives and works.  And I'm just going to test one question as well to make sure I'm doing things correctly!

DrCharlesShepherd

Sam_Scope said:

My question is, how can I best support a co-worker with ME? 

Sam_Scope said:

My question is, how can I best support a co-worker with ME? 

SUPPORTING SOMEONE WITH ME /CFS AT WORK

Good question because while many people with ME are no longer able to work, those who can will often need support from co-workers, modifications to their normal routine in relation to both physical and mental tasks, flexibility in relation to hours and duties, and hopefully an employer who is able to cope with someone who has a medical condition that can fluctuate on a day to day and week to week basis. That is quite a list!

As far as how co-workers can help, it’s important to find out how the key symptoms of ME - ie activity induced physical fatigue; cognitive dysfunction - problems with memory, concentration etc;  pain;  balance and problems with being able to do things that involve prolonged standing  - are having in relation to the work they would normally do.  And then looking at what sort of support and practical assistance they may need in the workplace - and possibly in travelling to/from work as well.

Also worth noting that ME/CFS is an illness that is covered by the old Disability Discrimination Act and the 2010 Equality Act

We have an MEA information booklet that covers all aspects of employment in relation to ME:

https://www.meassociation.org.uk/shop/medical-management-leaflets/employment-advice/

And one on Caring for Someone with ME which covers some of this as well

Chloe_Alumni

Great to have you with us @DrCharlesShepherd!! We're really looking forward to having you on the community! 

DrCharlesShepherd

Louise2001 said:

How do I recognize the signs of ME? What research has been done?

DIAGNOSIS OF ME

As we don’t yet have a diagnostic blood test for ME/CFS, the diagnosis has to be made on the way in which the illness starts, the characteristic symptoms, and making sure that other illnesses that can cause ME/CFS like symptoms are excluded (eg hepatitis C infection, coeliac disease, multiple sclerosis, thyroid disease)

ME/CFS often starts in previously fit young adults in their 20s, 30s and 40s.   But children and adolescents are also affected - where it is one of the commonest causes of long term sickness absence from school

Many people will predate the onset of their ME/CFS to an acute viral infection (and occasionally a vaccination) from which they 'fail to recover'

The characteristic diagnostic symptoms at the onsert of ME are continuing flu-like symptoms (eg sore throats, enlarged glands) following the infection; activity induced muscle fatigue and weakness; cognitive dysfunction (= problems with working memory and concentration); pain in the muscles, nerves or joints; unrefreshing sleep; problems with balance and maintaining an upright posture (orthostatic intolerance), disturbed temperature control and alcohol intolerance 

More detailed information on how the diagnosis is made can be found in a free download the MEA website:

http://www.meassociation.org.uk/2016/05/the-importance-of-early-and-accurate-diagnosis-helpful-hints-for-healthcare-professionals-that-could-improve-prognosis-9-may-2016/

The MEA website has a directory of all the ME/CFS clinics and services throughout the UK to where people can be referred by a GP if there is any query over a diagnosis

DrCharlesShepherd

Louise2001 said:

What research has been done?

RESEARCH INTO THE CAUSE OF ME/CFS

We are now starting to piece together a complex medical jigsaw puzzle that involves infection, immune system dysfunction and abnormalities involving the brain and muscle

In very simple terms it appears that a triggering infection produces an immune system response with the production of immune system chemicals called cytokines - which cause flu like symptoms and fatigue after any viral infection 

However, it seems that this normal response to an infection doesn’t then calm down and causes the persisting flu like ME/CFS symptoms.  Research is also indicating that this persisting immune system activation is leading to low level inflammation (= neuroinflammation) in control centres in the brain that are responsible for things like pain recognition, sleep regulation and  temperature control

Research into the muscle fatigue has also found that people with ME have a problem with the way in which they are able to produce energy at a cellular level - possibly because a key part of the energy producing apparatus in the muscle known as mitochondria are not functioning properly

The MEA has a ring fenced research fund which supports biomedical research into ME.  We also fund a blood sample bBobank at the Royal Free Hospital in London, which is part of the big UCL Biobank.   A Biobank is where blood samples from well characterised volunteers with ME/CFS are stored and made available to research groups

More information on research into ME and the ME/CFS Biobank can be found in the search section the MEA website:

https://www.meassociation.org.uk/research/

DrCharlesShepherd

jack13 said:

Ive had ME for 15 years. I find now my condition as worsened in the last year. Is ME a condition that will worsen the longer you have this illness? And is this common to happen. Longer your ill the worsening of the illness?

PROGNOSIS/OUTLOOK FOR PEOPLE WITH ME/CFS

There is a lot of anecdotal evidence on prognosis/outcome in ME.  But not a lot of good quality evidence from well conducted research studies that have followed people up for a long period of time.

Based on what we know, a significant proportion of people will make some degree of improvement over time.  However, complete and sustained recovery occurs far less frequently

As the condition becomes more chronic, most people reach a sort of ‘glass ceiling’ of improvement and remain fairly stable around this point - punctuated by periodic setbacks or relapses, often triggered by another infection

Around 25% of people, in some stage of their illness, have a severe form of ME - equating to being wheelchair- bound. house-bound or bed-bound

Progressive deterioration is unusual.  Where this occurs, it should prompt a new clinical assessment by a doctor, especially if this has occurred over a short period of time and without an obvious trigger (such as an infection, trauma or a very stressful event), or there are new symptoms that are not characteristic of ME/CFS (eg weight loss)

We have an MEA information leaflet covering Relapses, Exacerbations and Flare Ups:

https://www.meassociation.org.uk/shop/medical-management-leaflets/relapses-exacerbations-flare-ups/

And one covering Prognosis and Permanecy - which is helpful in relation to applications, where necessary for early retirement on the grounds of permanent ill health

DrCharlesShepherd

Chloe_Scope said:

Questions from Twitter:

1) How are chronic fatigue, ME and fibromyalgia different to each other? And similar?
2) When a rheumatologist diagnoses you with fibromyalgia, does this mean you also have ME and/or CFS? Or are they individual diagnoses?

OVERLAP BETWEEN FIBROMYALGIA (FM) and ME/CFS

My personal view is that there is a considerable degree of clinical overlap between ME/CFS and FM - but they are different conditions.

So some specialists who see patients with ME/CFS-like symptoms (ie muscle pain, fatigue, cognitive dysfunction, unrefreshing sleep etc) will make a diagnosis of ME/CFS whereas others (rheumatologists in particular) may make a diagnosis of fibromyalgia in the same person.

Some people have what I think is best described as a fibromyalgic component to their ME/CFS, whereas in other cases a diagnosis of pure FM would be more appropriate.

One important difference is that you have to have pain (often symmetrical/the same on both sides of the body that is in several localised areas or 'tender points') to have FM whereas musculoskeletal pain (localized or widespread) is not always present in ME/CFS.

The situation is clearly unsatisfactory and can be very confusing for patients.

If someone wants to pursue a possible FM component I suggest they ask their GP for a referral to a specialist referral service for ME/CFS, or to a rheumatologist.

And if you need more help with pain (regardless of diagnosis), and the GP cannot help, another option would be to ask to be referred to a hospital pain clinic

We have an MEA information leaflet covering all aspects of fibromyalgia:

https://www.meassociation.org.uk/shop/medical-management-leaflets/what-is-fibromyalgia/

We also have information leaflets covering the general management of pain in ME/CFS and leaflets covering specific drugs - amitripyline, duloxetine, gabapentin, pregabalin - that may be prescribed for pain relief in both FM and ME/CFS.

lisah15

What are differences between b12 deficiency and ME?   I have been vegetarian for 35 years. Was diagnosed ME 24 years ago following chicken pox when I was 18. Then b12 deficiency result of 84 three years ago. Could it have been b12 all along. I have neuro symptoms with memory, confusion, balance, numbness  speech problems which increase 4 weeks before my next b12 injection. GP says they are separate conditions but I read ME can be confused with B12 deficiency. I also have vit d deficiency.

DrCharlesShepherd

DrCharlesShepherd said:

Louise2001 said:

How do I recognize the signs of ME? What research has been done?

DIAGNOSIS OF ME

As we don’t yet have a diagnostic blood test for ME/CFS, the diagnosis has to be made on the way in which the illness starts, the characteristic symptoms, and making sure that other illnesses that can cause ME/CFS like symptoms are excluded (eg hepatitis C infection, coeliac disease, multiple sclerosis, thyroid disease)

ME/CFS often starts in previously fit young adults in their 20s, 30s and 40s.   But children and adolescents are also affected - where it is one of the commonest causes of long term sickness absence from school

Many people will predate the onset of their ME/CFS to an acute viral infection (and occasionally a vaccination) from which they 'fail to recover'

The characteristic diagnostic symptoms at the onsert of ME are continuing flu-like symptoms (eg sore throats, enlarged glands) following the infection; activity induced muscle fatigue and weakness; cognitive dysfunction (= problems with working memory and concentration); pain in the muscles, nerves or joints; unrefreshing sleep; problems with balance and maintaining an upright posture (orthostatic intolerance), disturbed temperature control and alcohol intolerance 

More detailed information on how the diagnosis is made can be found in a free download the MEA website:

http://www.meassociation.org.uk/2016/05/the-importance-of-early-and-accurate-diagnosis-helpful-hints-for-healthcare-professionals-that-could-improve-prognosis-9-may-2016/

The MEA website has a directory of all the ME/CFS clinics and services throughout the UK to where people can be referred by a GP if there is any query over a diagnosis

I forgot to add that one of the key diagnostic symptoms of ME/CFS, which also helps to differentiate it from other causes of chronic fatigue, is post-exertional malaise/symptom exacerbation - where going beyond your physical or mental limitations leads to an excerbation of the overall condition.  This can be delayed till the following day

Chloe_Alumni

Welcome to the community @lisah15! Thank you for your question

DrCharlesShepherd

Chloe_Scope said:

How should someone manage their chronic fatigue? There seems to be a fine balance between doing too much and not doing enough which can then make it harder when you do anything at all.

ACTIVITY MANAGEMENT

Activity and energy management, which should include physical, mental and emotional activity, has to take acount of the stage (ie how long you have been ill), severity, progress and variability of your illness.

In other words, the type of activity and energy management programme you carry out has to be done on a very individual and flexible basis.

The type of activity and energy management programme we recommend at the MEA is a process called pacing - which is consistently reported by people with ME/CFS to be a very safe and helpful way of learning to cope with ME/CFS.

We have MEA information leaflets covering activity and energy management, and pacing, in more detail

The other point I would make is that getting the right balance between rest and activity is often a do-it-yourself process involving a degree of trial and error.  

However, it is extremely helpful to have some good initial advice on establishing an appropriate baseline of safe activity levels, along with how to gradually and flexibility increase what you are able to do - as well as cutting back when appropriate

To do so people really need some help from a health professional - doctor, OT, physiotherapist - who fully understands the way to deal with this key aspect of ME/CFS management.

You could be referred by your GP to a hospital-based ME/CFS service for more help on activity management.  However, we do not recommend services that promote a more proactive form of activity management called graded exercise therapy (GET).

There are also a few private services available who can provide good expert advice on activity management

Eg - The Yorkshire Fatigue Clinic, which also takes NHS referrals:  http://www.yorkshirefatigueclinic.co.uk

And if you want something to show to a physiotherapist, or other health professional who is surpervising activity management but appears to be giving unhelpful or even harmful advice, this is an article from a professional journal for physiotherapists:

http://www.meassociation.org.uk/2011/01/physiotherapy-journal-urged-gentle-approach-to-prescribed-exercise-for-people-with-me-19-january-2011/